Big turnout to support IBC-NE at September 27 raffle event
Posted on 28. Sep, 2024 by ibcneco1 in News
A large turnout at the Cottage Bar in Weymouth drove a successful fundraising raffle to support the educational work of IBC-New England.
Thanks to the generosity and community spirit, the organization’s first raffle was a success.
Special thanks to great music by Tom Hamilton and the amazing SPX Band, special guest Stefan Economou, the Cottage Bar, and the Weymouth community. Guests enjoyed fantastic music and stellar hospitality. Representatives of IBC-NE shared information about this rare form of breast cancer.
Founded 15 years ago, IBC-NE is dedicated to promoting education and awareness building about inflammatory breast cancer. Considered somewhat rare, IBC accounts for 1% to 5% of all breast cancer cases. The disease has symptoms that are atypical, is often diagnosed in women under the age of 45, and can be very aggressive. Very little research has been done on IBC historically. But that is changing, with several clinical trials ongoing in Boston focused specifically on this disease.
In 2023, the Massachusetts legislature passed a permanent, statewide IBC Awareness Day to be marked on the second Tuesday of October with educational activities.
“There remains much work to do and more research is needed,” commented Sue Asci, 24-year IBC survivor and founder of the organization. “The support of family, friends, and the community is key to driving programs and research to advance the understanding of this disease.”
A night of music and hope with Tom Hamilton and the SPX Band at the Cottage Bar September 27
Posted on 11. Jul, 2024 by ibcneco1 in News
WEYMOUTH (September 27, 2024) — Community members, survivors and thrivers, supporters and music lovers will gather at the Cottage Bar in Weymouth on Friday, September 27 at 8 p.m. to sing, dance, have fun, and help support education and awareness about a rare form of breast cancer called inflammatory breast cancer.
Weymouth’s Tom Hamilton and his outstanding, popular band SPX will perform for the evening and donate their talents to help support Inflammatory Breast Cancer New England Region, a nonprofit 501( c) 3 charitable organization dedicated to supporting education and awareness about IBC.
Each year, thousands of women are diagnosed with IBC, which represents from 1% to 6% of all breast cancer cases. The disease however, can be aggressive. Its symptoms are atypical and do not usually present with a lump. Symptoms appear rapidly and include a red rash, swelling and skin changes. IBC is diagnosed more often in younger women, under the age of 45. IBC is misunderstood and very little research has been done on this disease.
Many people have never heard of IBC and are not aware of what to look for.
Medical providers, researchers, survivors and their families and friends are working to change that.
IBC New England, founded by 24-year IBC survivor Sue Asci, produces educational materials and supports a website which serves as a network for resources for patients and caregivers to find information and support services.
Working with Rep. Sean Garballey of Arlington, we advocated for passage of a permanent IBC Awareness Day in Massachusetts. Rep. Garballey led the charge at the State House and the bill became law in 2023.
Governor Charlie Baker signed into law a provision that permanently sets aside the second Tuesday of October as a day to educate and build awareness about IBC. Massachusetts is one of only a few states that have a permanent Inflammatory Breast Cancer Awareness Day.
IBC New England also supports educational tables at events, public speaking opportunities, and other events such as programs featuring researchers discussing clinical trials and developments that may further the understanding of IBC.
Join us for an evening of fun, music, and hope. Consider making a donation of a gift certificate or other prize for our raffle table. We plan to have a series of baskets to raffle as well as some silent auction items. The fun begins at 8 p.m. at the Cottage Bar, 26 Union St., Weymouth.
For more information, contact Sue Asci at 781-447-0848
Knit hats for IBC Awareness 2024
Posted on 28. Jun, 2024 by ibcneco1 in News
BOSTON (June 28, 2024) — Crafters from Boston and communities north and south are making hand-made chemo hats for women undergoing breast cancer treatment at area hospitals. The community crafting project is in recognition of Inflammatory Breast Cancer Awareness Day in Massachusetts.
Community crafters will knit and crochet hats to be donated to the Breast Health Center at Tufts Medical Center in Boston. Last year, more than 120 hats were donated, and some hats were also given to patients at Beth Israel Hospital.
Knitters from the Whitman Council on Aging have begun creating hats. Last year, the group made dozens of hats throughout the summer. Auntie Zaza’s Fiber Works in Easton is also participating again this year. Stop by the shop on 104 Main Street in North Easton for supplies and to learn more about donating a chemo hat.
This is the second annual Inflammatory Breast Cancer Awareness Day. Last year, Governor Charlie Baker signed into law a provision that permanently sets aside the second Tuesday of October as a day to educate and build awareness about this somewhat rare form of breast cancer. Massachusetts is one of only a few states that have a permanent Inflammatory Breast Cancer Awareness Day.
The bill was introduced by Rep. Sean Garballey of Arlington. The initiative was launched by IBC-New England, a nonprofit, charitable organization dedicated to building awareness and education about IBC.
IBC represents from 1% to 5% of all breast cancer cases. The disease however, can be aggressive. Its symptoms are atypical and do not usually present with a lump. IBC is also diagnosed more often in younger women.
“Gathering together to make crafts is a great way to contribute to a cause, learn from each other, and build awareness and educate,” said Sue Asci, of IBC-NE, 24-year IBC survivor, and organizer of the project. “This year we hope to expand our locations for drop-off and crafting, as well as include more cancer centers in our overall donation.”
The hats will be collected at the beginning of September. To learn more about the project and how to get involved, or to donate hats, contact Sue at 781-447-0848.
State marks first IBC Awareness Day
Posted on 21. Dec, 2023 by ibcneco1 in News
(Boston — December 21, 2023) — The state marked the first Inflammatory Breast Cancer Awareness Day with a series of events and a proclamation.
Members of the IBC board of directors, partners and policy makers met at the State House to mark the day. Representative Sean Garballey spoke about the significance of the event and presented a proclamation signed by Governor Maura Healy.
Representatives Joan Meschino and Vanna Howard also participated in the program.
The IBEW Local 103 in Dorchester displayed a message on their digital billboard on Route 93 announcing IBC Awareness Day. Thanks to assistance from Denterlein Communications, the day received a significant amount of media coverage.
Programs actually began in the summer and fall leading up to the day, October 10. Tufts Medical Center hosted an educational table distributing information about inflammatory breast cancer. Table displays were also set up in health centers and libraries in Boston and the north shore.
Community crafting programs brought together crafters with IBC survivors to share information about IBC. The resulting donation of more than 120 chemo hats for breast cancer patients were presented to Tufts Medical Center and Beth Israel Hospital. Participating knitters were: Ina Pratt, Kathy O’Brien, and Catherine Hocker of Whitman, from the Council on Aging; Stitch House in Dorchester, Wicked Good Yarns in Braintree, and Auntie Zaza Fiberworks in Easton. A number of individual knitters, including supporter Stephanie Fall, also donated.
In addition, another group of crafters organized by Rene Taber of Milton created more than 60 heart pillows for women undergoing breast surgery. Thanks to all who donated their time, guidance, and crafts.
Planning for 2024 has already begun. For more info on how to get involved, contact Sue at 781-447-0848.
Crafting events planned for IBC Awareness Day
Posted on 13. Aug, 2023 by ibcneco1 in News
Stitch House to hold crafting events in September
Dorchester (August 11, 2023) – The Stitch House yarn shop in Dorchester will hold two knit-along events in September to create and collect chemo hats for a donation to the Breast Health Center at Tufts Medical Center in Boston in recognition of Inflammatory Breast Cancer Awareness Day.
Crafters are welcome to participate and join others in making knit or crochet hats for patients undergoing treatment for breast cancer at Tufts.
The events will be held Friday, September 15 from 6:30 to 8:30 p.m., and Sunday, September 24, from 4:30 to 6:30 p.m., at the shop, 846 Dorchester Avenue. IBC survivors will be in attendance to share information and educational materials.
In January, the legislature approved a bill establishing a permanent Inflammatory Breast Cancer Awareness Day in Massachusetts. Governor Charlie Baker signed the bill into law on his final day in office.
The bill designates the second Tuesday of October as a permanent day to recognize and promote education about inflammatory breast cancer (IBC). The first IBC Awareness Day will be October 10, 2023.
IBC is an aggressive form of breast cancer. IBC accounts for about one to 5% of all breast cancers, and a disproportionate number of life years lost. Most women diagnosed are under the age of 40. The disease is also the least understood type of breast cancer.
The bill was proposed by IBC New England Region, a charitable, non-profit organization dedicated to supporting awareness and education about IBC as well as resources for patients. Learn more at our website, ibc-ne.com.
Several yarn shops on the south shore have also engaged their knitting/crochet groups in the project and are making hats including Wicked Good Yarns, 871 Washington St., (first floor, rear), in Braintree, and Auntie Zaza’s Fiber Works, 104 Main St, North Easton. Crafters may also visit these locations to find out more about making hats and donating them. In addition, the Whitman Council on Aging Knitting Group is making hats.
“Our goal is to collect 100 hats by the end of September for the donation,” said Susan Asci, 22-year IBC survivor and founder of IBC New England. “Community crafting is a great way to get people together to share the experience of creating and donating to others. It’s an opportunity to talk, answer questions, and share information with our friends, family, and neighbors.”
For more information visit the Stitch House, Wicked Good Yarns, or Auntie Zaza’s Fiber Works, or call Susan Asci at 781-447-0848.
Chemo Hats for Inflammatory Breast Cancer Awareness Day
Posted on 13. Aug, 2023 by ibcneco1 in News
Boston (August, 2023) – From the north shore to the south shore, dozens of crafters are making knit and crochet chemo hats to be donated to the Breast Health Center at Tufts Medical Center in Boston in recognition of Inflammatory Breast Cancer Awareness Day.
In January, the legislature approved a bill establishing a permanent Inflammatory Breast Cancer Awareness Day in Massachusetts. Governor Charlie Baker signed the bill into law on his final day in office.
Several yarn shops in the area have engaged their knitting/crochet groups in the project and are making hats including Wicked Good Yarns, 871 Washington St., (first floor, rear), in Braintree, and Auntie Zaza’s Fiber Works, 104 Main St, North Easton. Crafters may visit the shops to learn more, pick up some yarn and drop off donations. In addition, the Whitman Council on Aging Knitting Group is making hats.
In Dorchester, the Stitch House, 846 Dorchester Avenue, has announced two knit-along events in September to create hats for the project. The events will be held Friday, September 15 from 6:30 to 8:30 p.m., and Sunday, September 24, from 4:30 to 6:30 p.m. Crafters are welcome to attend this event, learn about IBC, and meet new friends. IBC survivors will be in attendance to share information and educational materials.
There are also many individual knitters from the north and south shore who are creating hats for the donation.
The bill designates the second Tuesday of October as a permanent day to recognize and promote education about inflammatory breast cancer (IBC).
IBC is an aggressive form of breast cancer. IBC accounts for about one to 5% of all breast cancers, and a disproportionate number of life years lost. Most women diagnosed are under the age of 40. The disease is also the least understood type of breast cancer.
The bill was proposed by IBC New England Region, a charitable, non-profit organization dedicated to supporting awareness and education about IBC as well as resources for patients. Learn more at our website, ibc-ne.com.
“Our goal is to collect 100 hats by the end of September for the donation,” said Susan Asci, 22-year IBC survivor and founder of IBC New England. “Community crafting is a great way to get people together to share the experience of creating and donating to others. It’s an opportunity to talk, answer questions, and share information with our friends, family, and neighbors.”
For more information visit the Stitch House, Wicked Good Yarns, or Auntie Zaza’s Fiber Works, or call Susan Asci at 781-447-0848.
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Dana Farber sets Annual Patient Forum
Posted on 25. Feb, 2023 by ibcneco1 in News
Dana Farber’s Inflammatory Breast Cancer Program is hosting its sixth annual Patient Forum on Saturday, April 1, 2023. This free, virtual event will offer attendees the chance to learn the latest patient-focused scientific information in inflammatory breast cancer treatment and survivorship.
The program will include two separate events held via Zoom.
The events are:
- Welcome and educational sessions
- For patients, families, and loved ones: IBC Social Work Group.
Educational presentations include topic such as surgery, facing anxiety with an IBC diagnosis and beyond, and immunotherapy. A round table discussion will focus on research and several clinical trials underway as well as open clinical trials.
A special social work discussion will be led by Julie Salinger, MSW, LICSW. This event requires pre-registration and space is limited, so register soon.
To request more information, contact DFCI_IBC@DFCI.harvard.edu. Or call 617-632-2311.
IBC Awareness Day Enacted
Posted on 12. Jan, 2023 by ibcneco1 in News
January 12, 2023
Inflammatory Breast Cancer Awareness Day established in Massachusetts
Governor Charlie Baker signed the bill into law on his final day in office
BOSTON (January 12, 2023) — The legislature last week approved a bill establishing a permanent Inflammatory Breast Cancer Awareness Day in Massachusetts. Governor Charlie Baker signed the bill into law on his final day in office.
The bill designates the second Tuesday of October as a permanent day to recognize and promote education about inflammatory breast cancer (IBC).
IBC is an aggressive form of breast cancer. IBC accounts for about one to 5% of all breast cancers, and a disproportionate number of life years lost. Many women diagnosed are under the age of 40. The disease is also the least understood type of breast cancer.
“Having a dedicated day to educate and increase awareness about this disease will do so much to offer hope and support for patients and help encourage more research,” said Susan Asci, of Whitman, a 22-year IBC survivor and founder of IBC-New England Region Inc., the charitable non-profit organization that initiated the proposal. “Receiving a cancer diagnosis is devastating. When you have a rare disease that has not been widely studied, it can make the diagnosis even more challenging and isolating. Often patients and their families have never heard of IBC.”
“I am so pleased that the legislature approved the bill and Governor Baker made it a permanent day in Massachusetts,” said Jim Brett, president of The New England Council and a founding board member of IBC-New England. Jim is a long-time supporter of resources and education for patients with IBC. “It has been inspiring to be part of this group of friends, providers, and caring professionals trying to make a difference for patients with IBC. One thing is clear: Hope is a powerful force, especially for people fighting a serious illness. And this Awareness Day is an important tool is sharing information and building hope.”
Representative Sean Garballey (Arlington), who is a board member of IBC-New England, sponsored the bill in the House and led the effort to advance it.
“I am honored to be part of this effort to help people who have been suffering from this disease. Having an awareness day is important in the fight against cancer. Setting aside this day is an opportunity to shine a light on this health issue and educate people more about this disease,” Sean Garballey said. “It’s an opportunity for advocates and health care providers to educate and inform. Information is an important part of quality health care.”
Symptoms of IBC are atypical and there is not generally a lump present. The cancer is virtually undetectable with standard mammography. Instead, most patients see a rapid onset of swelling and skin changes. Patients need to seek treatment as soon as possible. Often the disease is diagnosed at an advanced stage.
Funding research for rare cancers can be challenging. Less than 10% of clinical trials nationally include women with IBC. In New England, there are several cancer centers that are working to change the landscape for research. Dana Farber, for example, has a dedicated IBC program and is leading several clinical trials.
There are also more opportunities for peer support for patients and networking in the region. In 2001, Asci formed a networking group for women with IBC in the Boston area. Dana Farber also has a support group that provides education for IBC patients.
The awareness day provides an opportunity for providers, cancer centers, and patient organizations to hold educational events for the public, patients and their families. These activities may include presenting and distributing information about IBC, services, and resources.
“It will mean so much to patients with IBC, and their families and caregivers, to know that more people are looking at this disease, talking about it, and trying to understand it,” Asci added. “Knowledge is power. And the more we share, the more people we can help.”
For more information about IBC New England, and this effort, see the organization’s website, ibc-ne.com or call Susan Asci at 781-447-0848.
See the link to State House website for passage of the bill:
https://malegislature.gov/Laws/SessionLaws/Acts/2022/Chapter359(Note: the headline reads the first Tuesday, but the actual date is the second Tuesday, as reflected in the body of the text)
Dana Farber offers support and education programs
Posted on 23. Oct, 2022 by ibcneco1 in News
October 23, 2022 (BOSTON) — The Dana Farber Cancer Institute’s Inflammatory Breast Cancer program offers an education and support series for individuals with IBC. Each meeting includes an educational presentation followed by a support group discussion facilitated by Julie Salinger, MSW, LICSW.
The series is virtual. A recent session was held in early October. For more details about upcoming meetings and the schedule for 2023, contact Julie Salinger at JulieL_Salinger@DFCI.harvard.edu or Mariesa Powell at MariesaD_Poell@dfci.harvard.edu.
New grant funds research at Dana-Farber to advance diagnosis of inflammatory breast cancer
Posted on 23. Oct, 2022 by ibcneco1 in News
October 23, 2022 (BOSTON)– Susan G. Komen, the world’s leading breast cancer organization, awarded a research grant to apply a new, first-of-its-kind tool that seeks to more accurately diagnose inflammatory breast cancer (IBC). The grant funds collaborative work being done at Dana-Farber and The University of Texas MD Anderson Cancer Center.
World-renowned breast cancer clinicians Filipa Lynce, MD, Director of the Inflammatory Breast Cancer Center at Dana-Farber, and Wendy A. Woodward, MD, PhD, at MD Anderson, are building off findings from the Susan G. Komen-IBCRF IBC Collaborative, in partnership with the Milburn Foundation, that were recently published in Breast Cancer Research and Treatment. The research team’s work will involve the application of a scoring system to increase diagnostic accuracy, predict outcomes, guide treatment decisions and identify criteria for inclusion in clinical trials. The scoring system uses a set of common diagnostic criteria to differentiate between patients who definitely have IBC, have a strong possibility of IBC or have a weak possibility of IBC. Upon confirming the scoring system’s accuracy, it could then be applied prospectively to patients.
IBC has historically been difficult to diagnose because it does not often present as a lump in the breast rather it appears as swelling or redness in the breast. Diagnosis is often delayed, misdiagnosed or missed. By the time IBC is detected, the cancer has already spread to other parts of the body and has become incurable in 30 percent of patients.
“An IBC diagnosis is very dependent on a provider’s experience, which is not acceptable because patients should receive the same care, regardless of where they live and where they seek care,” said Lynce. “The tool will help to define IBC, increase diagnostic accuracy and provide data to standardize how we diagnose and treat inflammatory breast cancer.”
Susan G. Komen, the Milburn Foundation and the Inflammatory Breast Cancer Research Foundation (IBCRF) have worked cooperatively since 2016 to advance IBC research and care through innovative approaches. This grant award marks a key strategic milestone in the groups’ collective efforts, which have been supported through previous collaborative campaigns and joint efforts like the Susan G. Komen and Milburn Foundation fundraising match campaign in March 2022.
“This grant is a unique opportunity to not just validate the scoring system but also create the mechanism of collaboration that is needed to continue to develop and move IBC research forward,” added Woodward, study co-investigator. “I think this unique funding approach will offer an incredible model for how to facilitate progress in a rare subtype of breast cancer and the work will lay the foundation to accelerate research that will lead to identifying more therapies that can be used to treat IBC patients.”
“The Collaborative has brought together patients, advocates, clinicians and researchers on a singular goal – to make progress in understanding and diagnosing this disease and advance treatment options,” said Victoria Wolodzko-Smart, VP of Mission at Susan G. Komen. “The grant announced today is a crucial next step in improving outcomes for inflammatory breast cancer patients, who have long waited for a breakthrough.”
Dr. Lynce is an Assistant Professor of Medicine at Harvard Medical School and a Breast Medical Oncologist at Dana Farber Cancer Institute and serves as the Director of the Dana-Farber Inflammatory Breast Cancer Program. Dr. Woodward is a Professor and the Chief of the Clinical Breast Radiotherapy Service in the Department of Radiation Oncology at The University of Texas MD Anderson Cancer Center and serves as the Deputy Director of the Morgan Welch Inflammatory Breast Cancer (IBC) Clinic and Research Program.